24 November 2011

There's been an interesting hashtag on Twitter lately. #youmightbeanautismparentif is wonderful. I've laughed so hard at some of them. And at least one literally brought tears to my eyes.
testany time you buy a toy or book - you wonder whether it will be used for therapy or for reinforcement.

Oh yes. Oh yes. I have a bazillion toys. Some we use as therapy, to get him playing with toys. Some we use as reinforcement - he gets to play with them if he does something he doesn't want to, like repeat a sound or say a word. Or put on pants. I mean, who can blame him? Pants are bullshit. But sometimes they're necessary, so put on pants, get to play with the annoying toy that you love so much.

the line "One day you'll be begging for them to be quiet!" from other parents makes you wanna cry.

I may kill a bitch if I hear this again. Of course, now that he's almost 6, they've stopped. But honestly, when he was 3 and saying nothing, and I was getting him speech therapy for copious amounts of money, I just wanted to scream when I'd hear that. Crackle still doesn't talk. Pop does.

You celebrate the simple things, like a peaceful car ride or a full night's sleep.

Wait, what? These things exist?

sentences like "___ peed down the heat vent again" is a normal thing to say/hear in your house

ROTFL. How many times a week do I say, "Crackle peed on the floor of his room again" or "Crackle stacked up all his shirts and peed on them again"? I'm guessing 5 to 7 times a week.

your home could pass for a sensory gym or special needs school because of all the stuff you have for your kid.

Actual quote from a therapist, "This place is great! It's like an OT living room!"

Actual quote from a visiting kid, "WOW! Look at all the toys! WOW! Mom, do you see this?! WOW!"

you know your child is the cleanest kid in the building - 3 baths and counting.
It's a good thing I live on the west coast where water shortages aren't an issue. Crackle has between 1 and 6 baths per day. 6 bath days are rare, but they happen. Those are days when he's what I so eloquently refer to as "melty-downy". Bathing seems to help him calm down.

you find yourself celebrating and heartbroken - at the same time and for the exact same reason.

And there are the tears. Just the other day, I was totally celebrating because Crackle said "Mom" for the first time in several years. That's huge. (He also said syrup if that gives you a clue where I stand with him in terms of importance). And then I realized I was celebrating a 5.5 year old saying "Mom" and I started to cry.

ETA:You avoid Black Friday like it's the Black Plague.
This one had me in stitches. I can just imagine Pop in a Black Friday crowd. He'd say, "HOME HOME HOME HOME HOME HOME HOME HOME HOME HOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOMEHOME HOME HOME HOME HOME HOME HOME" until he was at home for at least 20 minute.

And Crackle? He'd happily sit in the shopping cart and eventually would fall asleep. I have no clue what's going on in his brain. He loves Future Shop, Costco, etc. The usual places that most Autism Parents have to avoid. LOVES them. If they're busy enough, like Costco on Saturday, he dozes off in the cart.

23 November 2011

Last week, the Globe and Mail reported that the Conservative crime bill would enable prisons to deny prisoners visits from family as a means of punishment for bad behaviour. The G&M calls this "mean-spirited" and I agree. (aside: Seriously, G&M. Could you at least pretend to be objective? I know it wasn't your term, but the Canadian Bar Association's, but quoting it in the headline is not a sign of objectivity.) It's not only mean-spirited, it's counterproductive, and is counter to the teachings of Jesus.

There've been a lot of posts on how counterproductive this is, so I'll sum it up with this: recidivism rates are higher when prisoners don't have visitors. So... duh. Counterproductive. Unless your agenda is to increase prisoner rates so that you can pay contractors to build prisons...

But what really strikes me is that these so-called Conservative Christians are completely ignoring Jesus. Again.

Jesus said to his disciples: "When the Son of Man comes in his glory, escorted by all the angels, then he will take his seat on his throne of glory. All the nations will be assembled before him and he will separate people one from another as the shepherd separates sheep from goats. He will place the sheep on his right and the goats on his left.

Then the King will say to those on his right hand, 'Come, you whom my Father has blessed, take for your heritage the kingdom prepared for you since the foundation of the world. For I was hungry and you gave me food; I was thirsty and you gave me drink; I was a stranger and you made me welcome; naked and you clothed me, sick and you visited me, in prison and you came to see me.'

Then the virtuous will say to him in reply, 'Lord, when did we see you hungry and feed you; or thirsty and give you drink? When did we see you a stranger and make you welcome; naked and clothe you; sick or in prison and go to see you?' And the King will answer, 'I tell you solemnly, in so far as you did this to one of the least of these brothers of mine, you did it to me.' Matthew 25: 31-40

We're called to visit prisoners (I don't... I just can't bring myself to do it. Maybe someday.) And these guys actually want to be able to take away the prisoners' right to be visited? It's stunningly mean. It goes so far beyond not visiting a prisoner. It's stopping everyone else from visiting! It's mindblowing.

I truly cannot even imagine what they think they're accomplishing here. That they cannot see how vile their actions are isn't surprising, given their track record. But at least, I can usually at least see their twisted reasoning. This one? Not so much.

I took a Sociology of Crime course back when I was working on an undergrad degree. It was a very interesting and very eye-opening class. For so many years I'd been told how soft our system is on young offenders. Apparently not. At the time, Canada had more youth incarcerated per capita than most countries in the world. Top 10 for sure. Maybe Top 5. I don't remember now. I'd like to see the stats now to see what's changed, if anything. I also learned that the vast majority of people in jail (jail, not prison) were in for non-payment of fines. Basically, debtors prisons where the prisoners owes the government. There is not a single fine that we shouldn't allow someone to work off with community service. And during off-hours too. Suppose I get a speeding ticket and I can't afford to pay the fine. They don't let me save up for it. The longer it takes me to pay, the more it costs me. I should be able to walk into city hall with my ticket and say, "I'd like to sign up for community service to pay this off". They pay me minimum wage against my ticket to work. If I have a day job, I can do my service at night. If I have a night job, I can do it during the day. If I have 12 hour shifts, I can do off hours. No one should lose their job because they got a ticket they can't pay. And that's the other problem with incarcerating people who don't pay. If they did have a job, they don't now because they got fired for being in jail. It's ludicrous. And it costs the government a fortune.

Incarceration is for people who are dangerous. Period. There's no excuse for a society to lock up people who don't pay a fine. And there's no excuse for treating prisoners as anything less than human beings with human rights.

It's a dangerous game though. If this guy had been unhinged or carrying a weapon, they could have been hurt. But I still basically approve. Maybe not of their methods... they could have found the wrong guy. And they could be hurt or sued. I think the cop who said that the target would now be aroused and would go after someone else is an idiot. That guy was already a predator. They didn't turn him into one. Hell no.

A few years back, I was online in a chat room and I ran into someone who was a pedophile. He wasn't in Canada, so there wasn't much I could do about it, but it got me looking for others. I'd pretend to be 14 and talk with some of the creepiest pricks on the planet. I'd set up meetings with them, and then email the transcripts to the RCMP and let them handle it. They didn't. I watched a few times. And then I gave up, because I just couldn't deal with the evil. The evil predators and the evil police who didn't do anything about it. It was too much for my soul.

So pardon the fuck out of me if I scoff with derision at the idea of the cops doing their jobs, of turning in tips to them and letting them handle it. It's a joke. They simply don't give a shit.

Entirely too many people don't give a shit about kids being abused. This point couldn't be more obvious in the last couple of weeks with the story of Sandusky raping children in the shower room, and having it be covered up. Because football and money are more important than the well-being of children. Obvs. And they're all guilty. McQueary, who caught him in the first place, should have stopped him, and called the cops (again, who probably wouldn't have done anything), Paterno and the other assholes who knew and did nothing, the asshole judge who let him off on unsecured bail (and who had taken money from the charity he set up to find victims!). In my mind, they're all guilty of abuse.

If you know of child abuse and you let it continue, you are part of the problem. If you have the power to lock the bastard up, and instead send him home to his grandchildren, you are part of the problem. If you know that a predator is planning to meet a child at the mall, and you don't bother to show up, you are part of the problem.

p.s. The title of this post. That's me. Geeking out. Also, if you're not part of the solution, you're the gross shit that's floating around in it, fucking up the solution for everyone else.

14 November 2011

Two nights before we were to leave, MrFCS went downstairs with an insomniac Pop at about 11:30 and started screaming for me to come down. Unusual... okay, so I run down there and the dishwasher has leaked about 10 litres of water onto the floor. So we cleaned that up and in the morning I called Eric The Dishwasher Guy. He came the next day, i.e. the day we were leaving, and took one look at it and said, "You need a new one". Shmeesh. He also stood in my kitchen and chatted with me for about 1.5 hours of my precious getting ready time. Thankfully, I'd called over someone to look after the kids for me in the morning while I got us ready.

I got all of our stuff ready and MrFCS came home a bit early so he could help and I could run out for a few errands - I needed boots, I'd found some, and dammit, I wasn't waiting. So I popped out and bought them. The lady there told me her son has autism too, and when she heard that I had three with autism, she came out from behind the counter and hugged me. :) So now I'm extra glad I bought them from her.

The ferry ride was uneventful, I guess. It was then that I realized I'd forgotten my camera and Snap realized she'd forgotten her meds. Crackle likes to ride the elevators and run the stairs. He's been a bit, um, more out of control than usual - shrieky and giggly and hyper - so that's never fun. Pop was scared and wanted to stay in the van and watch Thomas on the laptop.

We hit Vancouver at 4:40 on Tuesday. What works best for me and the mister is that I drive in traffic and he navigates. I do not read maps well and I find navigation stressful. He doesn't like driving in traffic. So that works nicely. We got us all to the Westin Bayshore, which is a beautiful hotel, and also where Showcase's show Endgame was filmed. (I loved that show, and Showcase can rot for not renewing it). The view was of Coal Harbour Yacht Club if that gives you any indication just how swanky the place is!

After we got some food into us, we took the boys down to the pool for an hour or so and left Snap to her computer. Oh my various gods, the kids love the water. Crackle laughs and squeals and holds on for dear life. It's like it's a roller coaster for him. Exciting and scary but terribly fun. Pop kicks and splashes and laughs. It's adorable. Then Crackle figured out there's a hottub and then the fun really started. Do you know what he loves more than anything? Going back and forth between the hot tub and the cool pool. GAH. He loves the shock of the temperature difference. I, on the other hand, hate it. Hate.

Also hate? Insomnia in children. In a shared room. I think we got about 4 hours of sleep. Then MrFCS went off to ApacheCon and I got the kids for the day. First thing we did was go shopping, because in addition to forgetting her pills, Ms Snap forgot her bathing suit. Apparently it is impossible to buy a cheap bathing suit in November (we could have got one at a specialty store. For $100. Dream the fuck on.) So I got her some cheap yoga gear and she wore that in the pool. While shopping, we took the boys to a toy store, and also we went and picked up a bunch more food for supper - we can't eat at restaurants with all of our allergies. Cannot be done. Anyway, more microwaved supper and then a nice walk down to Canada Place. Pop fell asleep in the stroller, insuring that he'd be up until at least 12:30. Fun. At least Crackle slept - thanks to GABA and melatonin.

Next morning. Shopping again. Because it kills time and wears out the boys. At the end of this was the infamous fender bender. Yay. Spent the afternoon spending $1.49 per call to phone ICBC and BCAA from the hotel room. Spent the evening in the pool. Another night of not much sleep. Gah.

Friday. Going home day. We had to check out by noon, but MrFCS's conference wasn't over until 5. So at exactly noon, we called a porter and loaded up our crap into the van and headed over to the Vancouver Aquarium to meet Katie, a Behaviour Interventionist who'd worked with the boys until about a month and a half ago when she moved to Vancouver. HOLY SHITSNACKS. The aquarium was a zoo. We waited 1/2 an hour to get in, and Crackle snitched a gluteny snack out of some other kid's hand while we were in line. Yay. :( So I ran back to the van for the charcoal pills. I think I managed to get them into him on time, because he doesn't seem to be glutened. Thank GOD. And wow. The boys absolutely loved every second at the aquarium. Crackle squealed with glee at the dolphins, and watched one of the tanks intently as the kelp waved in the water. He ran around in his glory. Pop? Same deal. He adored everything. Of course, crowds exhaust him, so he wore out quickly, had a quick nurse and fell asleep for an hour in the stroller. Even Snap had a good time. She liked the belugas best, I think.

Now, Friday was a crazy weather day. The first winter storm hit us while we were still in the park. Katie had to go, so we went too. I texted MrFCS and told him we'd just go find a place to park, eat snacks and watch the storm. He said screw it, he'd cut out early. And thank god he did. We drove to the ferry and JUST made the last one. We had to wait for hours because of wind delays and cancellations. But we got on the last one. And whooooooweeee! It was a bit of a bumpy ride. We certainly couldn't let Crackle run stairs in that.

So we got home at 10. The lady who looks after the dog brought him home for us. She'd also cleaned my house top to bottom while we were gone. I mean, she scrubbed the baseboards. She washed floors. She cleaned out my closet. HA. She warned me she was going to clean, but OMG. What a nice treat to come home to. I got a load of peed laundry into the wash and then crashed. Or that is, lay in bed with Pop while he watched TV and I slept.

Saturday, I went for a Healing Touch treatment. I am spoiled to have a good practitioner. It was so refreshing, I've basically recovered from my holiday. And she took the pain out of my ankle for a while. NICE indeed.

Did you know that if you see someone backing out of a parking space, you can totally just slam into them, regardless of whether you had time to stop or not? And it will be entirely their fault unless they can prove that you were speeding. In fact, they can veer out of their lane into oncoming traffic and smash into you and it's still your fault. It's true. That's what ICBC told me this morning.

While in Vancouver, I had the misfortune of being hit by a car in a parking lot. Or that is, the car hit my van as I was backing out. Here's the story: I was backing out of a tight parking spot with a large truck to my left and a small car to my right. I'd stopped (or at the very least was almost completely stopped - my foot was on the brake and my hand was on the gear shift) and a woman in a Nissan pulled through a 4 way stop and tried to veer around me, into oncoming traffic, and missed. She hit the driver's side back of my van with the length of the passenger side of her car. We both jumped out of the vehicles, took a look and then got back in and pulled safely into parking spots to exchange insurance info. As I was getting back in, the driver of the half-ton next to me said, "Did that just happen?!" I said "Yes. She tried to veer around me!" And he replied, "Yeah! Jesus..." Then he got into his truck and drove off. We got out and she said to me, "Are you okay?" I said, "Yes." And then stood there stupidly, shaken. She said, offendedly, "Well, so am I!" and I stopped and said, "Oh my goodness, I'm sorry. I'm just shaken. But you are okay?" She replied, "Yeah, I'm fine." We exchanged info and she left. I stayed where I was and ate a whole bag of chips, because apparently, chips are medicinal. Now you know. The kids were with me. They're fine too. In fact, it was so light, they didn't even know anything had happened. Snap did, of course, but she was fine. All she said was, "Holy shit! Where'd she come from?!" Yeah. Indeed. Here's a copy of what I gave ICBC:

So what the adjuster told me is that there's a difference between the legal obligation to stop and the moral obligation to stop. Seriously. I'm not impressed. This is going to cost a lot of money. And to the truck driver who saw it all and drove away, I hope you do the right thing when ICBC calls you. I may have been shaking, but I got your license plate number.

And that's another thing. If it's clear when I look, clear when I go and clear when I'm stopping, and then she barrels through and hits me, it's still half my fault?! Seriously? WTF?

And what really gets me angry is when people, like the idiot who hit me, try to scam the insurance company for money. She's claiming she's hurt. She's also saying I slammed into her, hard. My van is the biggest mess on the planet. If I'd hit her hard, shit would have flown everywhere. I don't think the map even was knocked off the dashboard. The impact didn't even break my tail light. The casing, yes. But the bulbs are fine. So clearly I slammed into her hard. *snerk* But now, I'm getting sued. It's not right.

But apparently the law doesn't give a shit about right. It only gives a shit about legal. :(

07 November 2011

It looks like I need a new GP. Mine came back from mat leave, only to work 1/3 time with a full client load. She will not be able to accommodate my wonky hours of availability, and my darlin' husband can't really take any more time off. Also, she's moved to the other end of the universe from here. And can I wait for 6 wks for a doctor's appointment? No, probably not. Usually I don't plan 6 weeks in advance for when I get sick.

This is a HUGE hassle, as many of you may know. There simply are no damn doctors here. Don't believe me?

There are no doctors in Victoria taking new patients. So what the hell am I going to do? I've got my ND, who is awesome, but she's not allowed to refer me to a specialist. Which is what I need. Why in the hell can't an ND refer, anyway? That's insane. It's not like the MDs are so underworked that they need me to come in there for a quick, "Oh. You need a specialist" appt.

I could gamble with a walk-in, but most of those really don't like to give referrals. They want you to come in there with a sore throat they can throw pills at, or a cut they can stitch up. Go there with "issues" and they ask why you're not seeing your family doctor. Riiiiiiiiiiight.

What really makes me mad is that we pay to educate doctors in Canada, and then they fuck off to the US where they can make big bucks. We could fix this so easily. Stay in Canada for 10-15 years or pay the entire cost of your education. Double down for people who work in rural areas.

In the meantime, I guess I'll hit the clinic on the corner, and hope I don't get Dr. Douchebag (the clown who tried to tell me I'd get no painkillers except Tylenol after my epidural wore off after the c-section, told me to eat Cream of Wheat for my anemia - I have Celiac Disease, told me I don't have Celiac Disease and to just eat the damn wheat, etc.) Because if that guy walks in, I'm not only going to need a doctor, I'm going to need a lawyer.

04 November 2011

I've already written about how much ABA therapy costs and how it's not covered by medicare, and how what the government does give us as parents isn't nearly enough to properly treat our kids. However, there is a lot more to Autism than ABA. There are a lot of hidden costs. Now, I'm not saying the government should fund all of these things too. I'm simply saying that if they'd get off their asses and pay for ABA, the hidden costs wouldn't be such a burden for parents.

First, a reminder of ABA costs, in case you're not a regular reader. And why aren't you?!

(This is ours. Other people spend more on OT or SLP or PT. We spend less than that on BIs because we can't afford it, obviously, but that is what is reasonable. Some people do 40 hrs/week)

What hidden costs, you ask?

1) Safety proofing the house
Remember when your little one was just starting to move and you had to baby proof? Now imagine that kid is 5. Strong and clever. And just as clueless about safety. How easy is it going to be to baby proof that? I've spent hundreds of dollars on door knob covers, that I have then had to duct tape on.

I'm currently considering replacing carpets that he's destroyed with urine, having electricians come and move some outlets to the ceiling. Also, I need shelves hung that I can put the DVD player and printer on. Because those things have moving parts and moving parts are crack to kids with Autism.

I've already put in a security system that announces loudly when doors or windows open. By the way Vivint is AWESOME. We've had their system now for a year and a half and it's been excellent. So that's not cheap, but is totally worth it. Seriously. I think it may have saved Crackle's life a few times already.

2) Gluten free diets
Gluten-free diets aren't cheap. I mean, even the federal government acknowledges this in the form a of a tax deduction for people with Celiac Disease. However, they make it really really difficult to claim. You can only claim the difference in price between gluteny food and gluten free. And you can only claim it for someone with a biopsy-confirmed dx. So if your whole family is eating gluten-free to support your Celiac patient, because it is virtually impossible to keep crumbs out of their food, too bad. You're on the hook for the costs. And if you do claim it, prepare to have it audited.

Now, gf can be done on the cheap. If you're not interested in eating bread, pizza, anything breaded. Because the substitutes for these foods are expensive. Even gluten-free flour for doing your own baking is expensive. But if you stick to fruit, veggies, seeds, nuts, rice, beans, you know, whole foods, you can eat pretty cheaply. I can feed our family of 5 for about $6 quite easily. But the kids do like baking and crackers and whatnot, so usually our grocery bill is pretty high.

3) Babysitting
When I was a teenager, I babysat kids for $2/hr. Nowadays, the average teenager gets $5/hr. However, I can't leave my boys with a teenager. I can barely look after them myself on a bad day. I have to get someone who has First Aid training at minimum. Babysitting costs $15/hr. for someone with enough skill to manage. And even then we've had a number of duds.

4) Doctor's appointments
Doctor's appointments are the bane of my existence. If anyone of us has an appointment, either MrFCS has to take the time off work (and God bless his union for making this possible) or I have to hire the aforementioned babysitter. For example, Crackle needed blood work the other day. I couldn't find a sitter, so MrFCS had to take the morning off so he could look after Pop for me, because it is simply not possible to look after both of them when Crackle has to be physically restrained. If Pop has an appointment, someone has to look after Crackle, because it is impossible to keep them both out of trouble and talk to the doctor. If I have an appointment, I cannot take them with me. So we use MrFCS's vacation days for doctors appointments and days when I'm sick.

5) Alternative medicines & treatments
"Autism. There's nothing I can do for you." -- Pediatrician.
Oh good. Let's not work on those symptoms or figure out if there are any underlying issues contributing to the problem. Moron. Our GP gives us 10 minutes per visit. 10. Minutes. Unless the kids have an acute health issue, like a sore throat, this is useless. So we see an ND for most of our health needs. She's lovely. She's a DAN! doctor and is well versed in alternative therapies that are science-based (herbal medicines are wonderful). However, she's not covered by medicare. Nor are the supplements she prescribes covered by our insurance. So that's a fortune. But she's done more for the kids than the half-assed ABA has. And she fixed my seizures, something none of my allopathic doctors could manage.

6) Therapy equipment
And speaking of the half-assed ABA. You know what else isn't covered? All the equipment needed to do it. Oh sure, some of it can be claimed under that measly $22,000, but then that cuts into the actual therapy. And again, only some of it is covered. OT equipment such as trampolines are not covered. Computers, iPads and apps are expensive. And then there are the little things that all add up. Like therapy balls, flash cards (OMG. $120 for one, albeit large, set of flash cards?!), PECS binders, printer cartridges, etc. get expensive quickly. Getting set up with equipment in the beginning costs about $700. Without a computer, iPad, trampoline or therapy ball. After that it's probably a few hundred a year.

7) Couples Therapy
I'm only sort of kidding with that one. :) MrFCS and I are okay, but many many families aren't. The stress of Autism in a family is a recognised cause of marital breakdown. Couples therapy, psychologists, etc. are even covered by Autism funding (if you're willing to take it out of your kid's ABA).

So... I'm tempted to put up a donate button. Instead, if you're so moved, go to CanadaHelps.org and donate to VSCA (Victoria Society for Children with Autism). They provide families with money to spend on respite care. It's a wonderful group. I'm a member, but I don't attend meetings. I'd have to hire a babysitter.

02 November 2011

Cancer is such a festering asshole. Last night, cancer, or that is, the treatment for it, killed a woman who has been on the periphery of my life for 33 years. That is, she's never been my best friend, but I've never really lost track of what's going on eith her, either. We were in Brownies together, we went to each others birthday paerties for years. Then I moved, but I still heard about her from a friend who was in the same area. My Mom is friends with someone who knows them well, so the updates came regularly enough.

Laurie was 37, same as me. She's not had it easy, health-wise. When we were little, she was diagnosed with Cystic Fibrosis. CF is a bitch all unto itself. But somehow, she weathered that well enough. I ran into her a few times in University and she was full of life. She got a degree in Education and became a teacher of the wee little ones. She got married. She had kids. She's leaving behind a three year old and 19 month old twins. It breaks my heart that these kids will not remember their Mom.

You remember how I started this post, right? Cancer. CF didn't get Laurie. Cancer did. When her babies were wee, she was diagnosed with Leukemia. She went through chemotherapy with newborn babies at home. And it worked. It killed the cancer. But it destroyed her liver. And she died.

And now I'm sitting at the ocean, watching the waves and the sun peaking through the clouds, listening to the seagulls mournful cries, and I'm crying for the life of a woman I haven't seen in almost 20 years and her babies who will never get to know her. And I curse Cancer. I shout at God that there had better be some fucking answers when all is said and done.

I'm going to leave my rants about the Cancer industry to another post. But look for it, it's coming. This post is just for Laurie. I hope God is treating you well now.

01 November 2011

Autism treatment isn't covered in Canada. Not even in BC where the government gives us a bit of money to buy treatment. It's a travesty. I've written before, and I'm doing it again, because GODDAMMIT I'm mad.

So I should be grateful I get $22,000 at all, right? Really? Would you be happy if the government funded half of what's considered a full treatment for your sick kid? No. You'd be goddamn good and mad. Your kid has Cancer. Here's funding for half his chemo. Go find a provider yourself. Here's a list of doctors we approved, and don't worry that some of them don't actually have their credentials and were grandfathered on to the list. And also, tell him to get better soon, because your funding runs out in a couple of years.

Ganz did a study on the cost to society of taking care of an autistic person over the course of his or her life. It's over 3 million dollars, most of that being adult care. If ABA can take an average of 30% of those people can help them to function at normal levels, and 80-90% of them significantly improve so that they need say half of the care funding, that's a metric shitload of money that we could save in fully funding ABA treatment.

Well, now Crackle is 5 and a half. He's almost to the Over 6 program. Which BLOWS. Because he's not improving and has, in fact, regressed on this half-assed ABA. The school board will get a chunk of money to help him, but they don't do ABA. They don't do treatment at all. And why should they? They're a school, not a hospital. They should be educating him. But they can't. Because they are so underfunded it's ridiculous.

I kept Crackle out of school this year and enrolled him in a Distance Learning school that lets me homeschool him. I have the school and the ABA provider work out an IEP and the ABA people administer the curriculum. This is fine until the end of the school year in June. After that, the money drops from $22,000 to $6000, and the school receives $18,500 (I think), but only provide me with access to $12,000 of it. They take the rest for administration. That is standard across all the distance learning schools. So, in effect, I'll lose $4000 from a program that was already underfunded by about $25,000.

So next year, what the hell do I do? I can't really send him to school, because the school board made it quite clear they would not even keep him safe, never mind actually educate him. They told me they would not be able to give him a full time assistant, asked me questions like, "How long can he be left unattended?" (answer: 4 seconds, max.) and gave me a highly skeptical look at my reply. Then when they observed him with his Behaviour Interventionist (BI) they asked her the same thing. Fortunately, she said the same thing. They didn't believe her either and kept pressing her for ideas for what they could give him to do that would allow him to be left unattended. Um... He'd leave. He'd go play in the woods. Or find a pond to splash in. And that was the school district here. The neighbouring one told me to go to SIDES (i.e. homeschool him with the government funded program) because there was no way they'd be able to accommodate him.

Also, is the issue of gluten. Crackle is so highly sensitive to it that if he so much as touches it, he's sick. Also, he mouths everything and eats non-food (and I don't mean McDonalds! I mean paper, dirt, rocks, fabric). So I tried to tell them he needs to stay in a food free environment. Hell no. "They eat in the classroom". Well, maybe find a lunchroom? Or send them to the gym? Or double up in another room? Nope. They said they could clean it. Ha. No way. No bloody way. Crumbs are everywhere. Yes, they clean for the peanut allergy kids. But they also advise people not to send peanut stuff unless absolutely necessary, and then they segregate those kids. Imagine if every kid in the class was eating peanut butter, shelling peanuts, and had food made with peanut oil. You gonna clean that up well enough for a peanut allergy kid to be safe? Hell no. This is no different.

I've given up everything for my kids. A career, a life outside my home, friends, family, everything. And I'd do it again in a heartbeat. But GODDAMN the bastards in government for making me do it. Goddamn them for telling me my kid isn't worth the money to treat. Goddamn them for doing this to all the other kids with Autism out there. Goddamn James Moore for calling us a special interest group that isn't deserving of medicare.

Feedjit

About Me

I'm a loud, opinionated, stay-at-home Mom of three awesome minions - Snap, Crackle and Pop. I've got entirely too much education, complete with entirely too much debt. I'm open-minded to a fault - my husband says my open-mindedness is bound to get me in trouble. I'm a feminist, a Christian, a socialist, though not necessarily in that order.

Blog Policies

Pretty simple one: My blog, my prerogative.Sexist, racist, or homophobic crap will not be tolerated. Comments I find annoying will be deleted should I feel the urge. Do not expect this to be fair, rational, or logical. Deal with it.